August 2013 Volunteer of the Month

Rhoda Mull

Maybe you’ve seen her at the Phillies Phestival, or maybe at Hot Chocolate, or the Walk to Defeat ALS®, or even in the halls of Washington. The fact is, if you are involved with the Greater Philadelphia Chapter, there is a very good chance you have seen Rhoda Mull, our August 2013 Volunteer of the Month, making an impact in the fight against ALS.

Not only is Rhoda working to end ALS for the 30,000 Americans living with the disease today, but she has a personal motivation as well. In January of 2007, Rhoda began experiencing a right foot drop and leg drag. Since it was barely noticeable, she ignored it for months before she made her first visit to a doctor that August. It wasn’t for another nine months, in May of 2008, that Rhoda received her life changing diagnosis and she started a new goal in life – to strike out ALS for good.

Like many others, it was not easy for Rhoda to get her diagnosis. She saw many doctors and took many tests with no definitive answers. They eliminated other conditions, including a brain tumor, a stroke, and Multiple Sclerosis. “After so much time and energy had been expended on diagnoses, it was hard to imagine having any energy left to deal with the disease,” said Rhoda. “It is a crossroad and you have choices. One of my choices was to give back. There are upsides and downsides to this disease and volunteering is on the upside. Now, six and a half years later, I believe my life is so much more fulfilling because of my activities with The ALS Association.”

Before her diagnosis, Rhoda was a lawyer, and she was able to continue working at her profession until very recently. Her experience as a lawyer has helped her tremendously in her work to organize others to the cause and to advocate for new treatments and services for people with ALS.

The debilitating nature of ALS can make the logistics of traveling to Washington, D.C. and Harrisburg frustrating, but Rhoda makes ALS advocacy a priority, and her experience as an attorney makes her a natural fit for this vital role with our organization. As Rhoda put it, “Going to visit members of Congress is less daunting than representing a client before a judge.”

That may be true, but as anyone who has taken their story to Congress can attest, the process can be challenging and nerve wracking. People who speak with their legislators are often willing to share very personal stories in order to convince their Representatives and Senators to understand the importance of ALS research. Making things even more difficult for Rhoda is that she can have trouble speaking and being heard by others, but that does not stop her. She makes sure that every word she speaks has purpose and impact and she also makes sure to command attention from each Representative. Rhoda gives voice to all people living with ALS.

“I find that legislators and their staff are attentive and supportive,” said Rhoda. “Being an advocate is so rewarding that it easily makes up for any of the logistics of traveling.”

Rhoda is very committed to ALS research. She participates in every clinical study that she can and has just created a named fund dedicated to ALS research. As Johns Hopkins University says “the hope is in the science,” and Rhoda very much wants to be a part of the science, the hope, and the cure.

Rhoda’s commitment does not stop at advocacy and research, though those things alone make her stand out as an exceptional part of our efforts. She organizes a team for the Greater Philadelphia Walk to Defeat ALS® as well, with incentives to help bring more of her network into the cause. Her goal for her first walk was $2,000 and 20 walkers. Her team ended up raising $4,000 and boasted more than 20 walkers and she is ready to beat that goal again in 2013. Rhoda had her team picture made into a thank you card and she then thanked participants by inviting them to the Phillies Phestival, which 26 members of her friends and family attended, and Hot Chocolate, where 10 attended. People are already asking her how they can get involved in this year’s walk.

Nothing will stand in Rhoda’s way of accomplishing her dream of a world without ALS. Her goal is not just a drug to cure the disease. Rhoda wants to make sure that all people living with ALS are heard and respected.

“We have to find a treatment and a cure for this devastating disease,” said Rhoda. “Volunteering is one step in that direction. It takes a collective dedication to the fight against ALS and no matter if you do a little or a lot, your contribution does so much to the greater good in this mission.”

From advocacy to establishing a named fund to organizing attendance at Hot Chocolate, the Phillies Phestival, and the Walk to Defeat ALS®, thank you to Rhoda for doing so much all year round to lead the fight against ALS.